Update

forme
forme Member Posts: 1,161 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi All,
Well, the sis in law has gone home to FL. Whew and yeah!! I feel like I can breathe a little better. I am so ready for my life to be back to "normal".

I have been talking to MD Anderson, and they said that they did find some worrisom nodes in my neck and also the one in my mediastinum area. Some may be able to be biopsed others are to deep and small. So a possible plan may now include IMRT. I will repeat the scans before starting any rads. As far as the lung tumor, watch and wait... Thats okay, it's just hard knowing that there is something in my lung that does not belong there. As long as it does not grow and or cause any breathing issues, I should be fine leaving it there.

The news with my shoulder is not so good. I guess I reinjured it , maybe moving MIL in bed. I have new tears, partial deep tear of the labrum and loose debris floating in fluid that should not be there. The Dr. said that if it were any other person he would take them to surgery and fix it right away. But since it was me, and I had such a hard time with the pain management last time, he is going to try giving me Pred. YUCK. I do not like taking Pred, but if it may help me have less pain I will give it a try. He didn't sound to hopeful that it will work, but wants me to try it anyways. If it is not improving in a few weeks or if it gets worse, then I will have to have it fixed. Another operation..

My emotions are all over the place. One minute I am feeling so positive and then the next I am just ready to call it quits. I know that I have to keep going forward, but it's hard.
I'm so tired and so tired of Drs and hospitals and pain. Today the road feels very long.
I guess I'm just feeling overwhelmed with all the medical thats looming in front of me.
Sorry for such a long post, I just needed to get it out.. Thanks for supporting me.
Lisha

Comments

  • JoanieP
    JoanieP Member Posts: 573
    #2
    so sorry
    Lisha ,
    I am so sorry you are having a rough day. I don't know if you are a woman of faith but I go in my office every morning and do some deep breathing and praise God for all the good things in my life and just give him what I can't control and then Pray hard I won't take it back. I prayed for you this morning and I will contiue to do so that your life will become so much easier. Cancer is the pits. God wrap his loving arms around you today and make you feel better.
  • forme
    forme Member Posts: 1,161 Member
    #3
    JoanieP said:

    so sorry
    Lisha ,
    I am so sorry you are having a rough day. I don't know if you are a woman of faith but I go in my office every morning and do some deep breathing and praise God for all the good things in my life and just give him what I can't control and then Pray hard I won't take it back. I prayed for you this morning and I will contiue to do so that your life will become so much easier. Cancer is the pits. God wrap his loving arms around you today and make you feel better.

    Thanks
    Hi Joanie,
    Yes today has been a rough day. I am feeling a little less stressed right now. It just comes in waves. Of course pain plays a big part in all the stress. I'm going to take another pain pill and my daughter is over to cook up a fresh caught steelhead salmon. I'll check back in later tonight after the meds kick in and after I eat.
    Peaceful healing
    Lisha
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    Here we go again.Huh
    Lisha,
    I hate to say it but I think your dreams of being a football player are over with that injured shoulder. I know that breaks your heart:( Now lets get down to the other stuff.I know what you mean about wanting to be normal again. I still have days where I feel tired alot too. I don't think the 100% thing really ever comes back. One of the reasons is the constant worrying we do. We all do it even though some say they don't. I say it too and know I still think about all this crap. I just wish they would stop all this watch and wait stuff with everybody. While they do that we watch,wait and worry. Its all a big roller coaster of ups and downs. We feel good and then the what ifs hit us and down we go. We all do that too. Is it really all that important to shrink the tumors as it is to make them inactive. I am assuming they are active,but I may be wrong.Are they saying what the lump in your lung might be or they do not know? I know we are all different in the way we react,but it is still confusing to me a lot of the time. We are still here and still behind you all the way. John(FNHL-1-4A-5/10)
  • forme
    forme Member Posts: 1,161 Member
    #5
    COBRA666 said:

    Here we go again.Huh
    Lisha,
    I hate to say it but I think your dreams of being a football player are over with that injured shoulder. I know that breaks your heart:( Now lets get down to the other stuff.I know what you mean about wanting to be normal again. I still have days where I feel tired alot too. I don't think the 100% thing really ever comes back. One of the reasons is the constant worrying we do. We all do it even though some say they don't. I say it too and know I still think about all this crap. I just wish they would stop all this watch and wait stuff with everybody. While they do that we watch,wait and worry. Its all a big roller coaster of ups and downs. We feel good and then the what ifs hit us and down we go. We all do that too. Is it really all that important to shrink the tumors as it is to make them inactive. I am assuming they are active,but I may be wrong.Are they saying what the lump in your lung might be or they do not know? I know we are all different in the way we react,but it is still confusing to me a lot of the time. We are still here and still behind you all the way. John(FNHL-1-4A-5/10)

    Major leagues
    Hi John,
    Yes my dream is over, wanted to be in the major leagues, pitching.. Oh well, guess I need a new dream.
    It really does help me to know that you and the others are there for me whenever I may need you. I too am here for you and everyone else.
    After I had my rads in 97, I never got back to 100%. I did get to a place where worry was in the way back of my mind. You too will get there. Maybe you will even hit 100%. The most I returned to was about 85%. So I started this new journey in the negative percent of wellness. Does that make any sense? Must be my morphine talking..
    Right now I am just all over the place, up and down and every which way but great.
    To answer you about the lung, they called it a tumor that is a node?? Thats what they saw on the PET and the CTs. It did not take up radioactive iodine so if it is mets from the thyroid ca it will be difficult to treat. If it is from lymphoma or other ca there may be other/more options. Since it is small, they feel it is fine to do nothing but WAIT. Wait till it grows or multiplies or makes it hard to breathe, I don't know. Waiting is the name of the game right now. I would rather not play...
    I too get confused, being a former nurse helps me understand a lot more but not everything. I still try to learn new stuff daily. I try to keep the radiation brain from taking over. It's a lot like chemo brain. memory is not so good and I use to have a really great memory. Oh well.
    Peaceful healing
    Lisha
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #6
    forme said:

    Major leagues
    Hi John,
    Yes my dream is over, wanted to be in the major leagues, pitching.. Oh well, guess I need a new dream.
    It really does help me to know that you and the others are there for me whenever I may need you. I too am here for you and everyone else.
    After I had my rads in 97, I never got back to 100%. I did get to a place where worry was in the way back of my mind. You too will get there. Maybe you will even hit 100%. The most I returned to was about 85%. So I started this new journey in the negative percent of wellness. Does that make any sense? Must be my morphine talking..
    Right now I am just all over the place, up and down and every which way but great.
    To answer you about the lung, they called it a tumor that is a node?? Thats what they saw on the PET and the CTs. It did not take up radioactive iodine so if it is mets from the thyroid ca it will be difficult to treat. If it is from lymphoma or other ca there may be other/more options. Since it is small, they feel it is fine to do nothing but WAIT. Wait till it grows or multiplies or makes it hard to breathe, I don't know. Waiting is the name of the game right now. I would rather not play...
    I too get confused, being a former nurse helps me understand a lot more but not everything. I still try to learn new stuff daily. I try to keep the radiation brain from taking over. It's a lot like chemo brain. memory is not so good and I use to have a really great memory. Oh well.
    Peaceful healing
    Lisha

    dam
    The Giant's could have used you, now that the Phil's got Cliff Lee!!!! LOL, Lisha you are a strong person, never give into to this! keep doing what you have to do to get better! As always, positive thoughts your way! Vinny
  • merrywinner
    merrywinner Member Posts: 626 Member
    #7
    Hi LIsha
    Well at least you now have time to dedicate to just you. I know it will all get sorted out eventually and hopefully you can compartmentalize each issue and deal with it that way. Do you feel you've gained a better perspective after going to MDA? My thoughts are with you along with my prayers. Mary
  • miss maggie
    miss maggie Member Posts: 929
    #8
    disappeared
    I typed a message in response to your post. 4 paragraphs. I clicked post comment, it never showed up. From now on after I type, before I click post comment, I will click copy.

    I am so sorry, I have to go now. I will re-post tomorrow. If not, sunday.

    Love Maggie I am furious
  • miss maggie
    miss maggie Member Posts: 929
    #9
    Update
    Good Morning Lisha,

    A sigh of relief, the house is yours and Keith's once again.

    I have no idea if the following info is helpful to you? In Oct 2009 I had my first Pet Scan.
    "There is anymetric thyroid uptake with an SUV of 3.1 in the right lobe of the thyroid." "Follow up with ultasounds and fine needle aspiration is recommended to exclude malignancy." "There is a small nonspecific lymph node in the right intramamary chain with mild increased uptake." I had an ultrsound and fine needle aspiration of the area. It turned out to be a small goiter, which is normal for anyone in their late fifties. I also have a small lump (tumor)in the back of my bottom mouth under my tongue. I had a biopsy in Nov 2009, it turned out to be negative. I have no idea why it's there in my mouth. I have no problem eating, and I have all my teeth. The doctor didn't remove the lump. I didn't ask why, but I suppose if they had removed it, it might have affected my speech.

    I was sick, anxious, and depressed after reading the report, and waiting for the final results. As you can see, I was my worse enemy. I agree, all we do is wait, wait and more waiting.

    I am especially sorry for the pain in your shoulder. I too hate prednisone. I have asthma, and when it acts up real bad about twice a year, I have to take prednisone. The side effects for me are increased hunger, depression, I get nasty, and weight gain. But, it does get me better.

    Please hang in there. Hopefully your thoughts will be less scary.

    Blessings and prayers. Maggie
  • truckingalong
    truckingalong Member Posts: 445 Member
    #10
    miss maggie said:

    Update
    Good Morning Lisha,

    A sigh of relief, the house is yours and Keith's once again.

    I have no idea if the following info is helpful to you? In Oct 2009 I had my first Pet Scan.
    "There is anymetric thyroid uptake with an SUV of 3.1 in the right lobe of the thyroid." "Follow up with ultasounds and fine needle aspiration is recommended to exclude malignancy." "There is a small nonspecific lymph node in the right intramamary chain with mild increased uptake." I had an ultrsound and fine needle aspiration of the area. It turned out to be a small goiter, which is normal for anyone in their late fifties. I also have a small lump (tumor)in the back of my bottom mouth under my tongue. I had a biopsy in Nov 2009, it turned out to be negative. I have no idea why it's there in my mouth. I have no problem eating, and I have all my teeth. The doctor didn't remove the lump. I didn't ask why, but I suppose if they had removed it, it might have affected my speech.

    I was sick, anxious, and depressed after reading the report, and waiting for the final results. As you can see, I was my worse enemy. I agree, all we do is wait, wait and more waiting.

    I am especially sorry for the pain in your shoulder. I too hate prednisone. I have asthma, and when it acts up real bad about twice a year, I have to take prednisone. The side effects for me are increased hunger, depression, I get nasty, and weight gain. But, it does get me better.

    Please hang in there. Hopefully your thoughts will be less scary.

    Blessings and prayers. Maggie

    Waiting and Surviving
    Hi, Lisha,

    After reading all the posts of painful watchful waiting and the experience of surviving, I realize I am in the beginning of it even though I already went thru this in the past 6 months (and without knowing I have had it for at least a year). I will have to endure days of anxiety, fatigue, frustration, impatience, and then feel relief or disappointment to receive good or disappointing news of test results for the rest of my life. I hope, Lisha, that you at least, feel better after settling down in your home and focus on one issue at a time even though it is not easy not to think of several issues at the same time. When I found myself depressed when my physical discomforts could not escape my body like it did for 10 continuous days after my last chemo, I just went to something to distract me and that helped me a bit even though at that time I felt nothing literally helped me! My thinking got locked up - it kept on going round and round in my head that I had to shake it up, ya know? I am with you all the way and please take care of yourself. I am glad to hear from you.

    Hugs,
    Liz

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